That Feeling of Failing

April 17, 2018

It seems that managing Robert’s life became very difficult lately. As I age and my health seems to slow me down, my goals for Robert seem much harder to reach. Even worse, too often I feel lost, confused and exhausted. There are small things to manage like his bank account or SNAP program and there are very important things such as his behaviors and his medical needs.

I filled incorrectly Robert’s renewal SNAP application and his benefits decreased significantly. Yes, I corrected that issue, but not before a few days of postponing and a couple of hours waiting on the phone for a person to talk to.

The bank where I have a Rep Payee account charged this account $3 a month for paper statements and then it took $10 for not making one operation on this account. Both things are my fault. I was sure that when I opened the account that I asked for on-line only statements, but it is possible that I misunderstood something. I was sure that making two operations a month would be done almost automatically as there is a direct deposit coming every month. One month, however, it came on the first of the month and on the 30 of the same month, but not in the following month. So the account was debited for $10. I should have a better grip or at least I should noticed that $3 since I do all the operation on-line any way. I didn’t notice. I looked only at the top of the page and didn’t screen down. So now, I am transferring to another bank which doesn’t have those fees, so it might be easier to manage. Still, that process, which didn’t end up yet, took me a few days to complete, with three visits to both banks and to Social security Office. I still need two more visits and one with Robert. Small issue but so much energy, so much hesitation and questioning my decisions.

Unfortunately, there are more important issues, I am failing also.

3. Yes, I prepared myself for Robert’s last ISP. I listed his experiences with work in and out of the house. I made four different rather concise papers to describe his progress and his regress. Still, I was not able to even read the ISP which was sent to me 2 weeks ago. I kept forgetting, busy with other things and/or kept postponing dealing with it because I am simply afraid what I can find out about Robert and about how he is perceived by others and how needs are addressed. If I am even afraid of reading then how can I address issues that might be there and which affect Robert.

4. I find myself reluctant to even ask managers of his program basic questions. So, I know practically nothing about his days there. His daily notes don’t tell anything at all. He cannot tell me anything. Sometimes I deduce something from changes to his program which are usually not encouraging.

5. I know that Robert needs to better understand his world, the time that passes him by, the way different people relate to him, and he has to have better picture of himself. I have floating ideas coming and going through my mind, but when it comes to teaching Robert, I always use prepared materials . I never create materials for him even though I have vague ideas about what he needs and feel strong obligation to do so.

6. My son’s former pediatrician wanted to help me to find the Primary Care Physician, but I rushed and found one myself. I just wanted to have Robert to be settled with the set of doctors. It seemed silly to have him waiting in the room full of babies or toddlers. Now, I found out that my ability to communicate Robert’s medical needs to the new PCP are almost non-existent. I have so much to share, but the doctor has very little time. I try to be concise but that is impossible with Robert long history of behavioral and medical issues that intertwine each other. The few visits to the doctors didn’t bring Robert any relief. I find myself having trouble convincing doctor, that Robert’s behavior points to a pain not to the diagnosis of autism. The autism is not responsible for the pain only for a lack of ability to communicate his pain appropriately. As long as I suspect that there is an underlining medical issue to the painful screaming I cannot apply any behavioral management techniques. This last problem is breaking my heart as it becomes clear and present danger to Robert. I hear so many histories of individuals unable to communicate his pains being dismissed by all kinds of doctors. Not only mothers are not believed, but also direct caretakers in residential homes. Their observations of sudden change in behaviors are so easy ignored. Robert still cannot communicate with physicians. I have to do that for him, and I am failing.

7. In the past I was very capable of addressing Robert’s inappropriate behaviors. Now, I don’t know how to get rid of his screaming and frequent slapping his own face in small, quick movements. I know that some instances those behaviors are related to the pain he is experiencing. Although I cannot help him with that, I do give him lots of attention during his time of discomfort. That allows Robert to make the connection between his screaming and our responses, so he screams, although differently, when he is just upset about something not important. Yesterday, he made noises while searching for a broken knife I threw in the garbage and carried to the trashcan outside. He found only handle and brought it home.

Somehow, I convinced him to throw it away. Hesitantly but without making any inappropriate noises, he put the handle in the garbage.